The website is designed to be owned by those affected by CVI, and grow with them.
At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards beginning to master this complex spectrum of conditions.
To forward our understanding of how CVI affects people we regularly engage with parents and those affected by CVI. The findings we share on this website, and we are clear that the source is parents’ first-hand accounts, although our professionals provide guidance throughout.
CVI is essentially a spectrum of spectra. Throughout our brains there are multiple parts that determine how we see and engage with our visual worlds. For the person with CVI, some, or many of these parts do not work in the same way as for others, creating an alternative visual world for that person, as if there are filters that make them see differently. It is not possible to ‘see’ someone else’s world, but with guidance we are aiming to understand their world from their perspective. We have called this working out how to see how others see from inside to out.
In the section What Is CVI we have attempted to explain CVI, and then show how to interpret the actions and behaviours of the person with CVI, through a process we have called the CVI Pathway. This is not a traditional visual assessment. Rather than focusing on what the people with CVI don't see (which can be of limited use to understand the person with CVI) we are encouraging you instead to focus on recognising what they do see, and what this tells you about their visual world, and how this can affect their behaviours in different situations.
The information has been written by parents, but with support and advice from multiple professionals including ophthalmologists (eye surgeons), scientists and highly experienced specialist teachers of the visually impaired.
The information guided by our team is paired with many first-hand accounts from both people who have CVI, and the parents of children with CVI – these are our true experts and we are enormously grateful for their input.
As CVI Scotland develops, we will continue to engage with the CVI community and look to share more experiences, and in turn learn more about this complex and often misunderstood condition.
Once CVI has been identified and a diagnosis applied, it is no longer a 'medical condition’, it becomes an alternative state of normality for those affected and their families. The information on this developing website aims to explain and supplement information provided by professional assessments. It is designed to help readers understand the nature of CVI from a daily living point of view. The aim is to explain what everyone needs to know, so that instead of being a mystery, the way affected people see and their behavioural responses to their vision become common sense, so that approaches that families have found helpful are obvious, easy to adopt and become part of everyday life.
The information is not meant in any way to be an alternative to professional assessments.
Instead it aims to help explain what may be found by professionals, and to help parents and carers to understand, in depth, the vision of the children they look after, its impact on daily living, to work out how best to help and look after them
The optimal environment for the person with CVI is one where those supporting them (parents, friends and carers) have a confident understanding of their visual world, which they can share with (to be supported by) the professionals involved in the care of the individual.
This website is under construction, but we wanted to share with you what we have managed to put together so far. Whilst we continue writing we are regrettably unable to handle enquiries, which is why there is not a ‘contact us’ section at present. We have a number of future plans, but need to fully complete the initial website before progressing further.
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The CVI Scotland Team
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At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.